A friend of mine recently loaned me the book What Really Killed
Gilda Radner by Neenyah Ostrom. In
it, there is a chapter titled Children with CFIDS. I believe it is important to report on
CFS/ME in children
and this interview with Dr. David Bell, by author Neenyah Ostrom, reminds us that adults
aren't the only
ones harmed by this disease. Since I have seen and been contacted by several parents of
children with
CFS/ME, I thought that this article would be most appropriate since this tragedy applies
to the innocent
children just as it does to the adults stricken with the same disease.

In Dr. David Bell's interview, by Ostrom, he described a
study of five children who were part of a
"cluster outbreak," and presented an overview of the immunologic abnormalities
found in patients involved
in the outbreak. Dr. Bell, who then was a clinical instructor in the Department of
Pediatrics at the University
of Rochester, gave his presentation at the First International Conference on Chronic
Fatigue Syndrome and
Fibromyalgia in 1990. Bell presented his overview of the children's immune system
abnormalities which
included a nearly total lack of cell-mediated immunity and lowered natural killer cell
activity. He also
discussed the "family clusters" he had observed as a result of this
"cluster outbreak" in upstate New York.
Furthermore, he stated that fifty percent of the children who meet the CDC criteria for
CFS have at least one
other immediate family member who exhibits "exactly the same complex of
symptoms."

What I found particularly intriguing, by Ostrom's interview,
was Bell's description for his system of
"staging" the severity of the illness in children. Since I haven't run across
this information previously, I felt
it best to present it to our readers because it serves as a reminder of the severity of
the illness in patients.

The staging system that Bell used was "very
crude." Repeating from the interview: In Stage 0, the
patients have regained 100 percent activity and have no trace of symptoms. Furthermore,
"they consider
themselves to be completely cured."

In Stage 1, the patients seem to have regained 100 percent
normal activity, but they "feel that there's a
residual of symptoms from CFS."

Stage 2 patients have mild to moderate symptoms with 70 - 75
percent of their pre-morbid activity. Bell
stated that they were "functioning pretty well." Furthermore, he mentions that
many of the adults have gone
back to work full-time.

Stage 3 patients have regained moderate activity,
approximately 50 percent of their activity before
becoming sick.

Stage 4 patients exhibit what Bell described as "severe
symptoms" as they were only functioning "about
25 percent and are intermittently confined to bed."

Stage 5 patients, however, were "essentially bedridden with
very severe symptoms" according to Bell.

At the conference and in the interview, Bell presented the immunological findings
in five children. In the group of five children, all had been at Stage 4 for a
"prolonged period of time."
Their ages ranged from 12 - 18 years and had been ill for between two and six years. The
group included
three girls and two boys. Immune system tests showed "a wide variety of
abnormalities" and no one result
was consistently abnormal "except for some NK (natural killer) cell subsets
which are clearly in the lower
range." In addition, the children showed disturbed T-cell CD4/CD8 cell ratios. He
found, for instance, one
of the children's cell ratio to be 4.3 while another was 3.0. Bell noted that this
disturbed ratio was
due to a decrease in the T-cell CD8 (suppressor) cell population. Two of the other
children showed an
increase in the CD20 (B-cell) population. He pondered on whether or not the patients
with decreased CD8
cells differed from those with increased CD20 cells.

In addition, one of the five children had a "clearly
elevated" level of antibodies to HHV-6 while the
others were "somewhat elevated." Bell however, pointed out that it was not clear
what level of antibodies
against HHV-6 was "normal" for this group.

Bell also learned that one child in the study had an
elevated alpha-interferon level while "virtually all of
the children we've tested whose illness is stage three or higher, had a lowered response
to skin testing" using
the CMI Multitest. This is a test for delayed hypersensitivity. (Author's note: The CMI
test is used on AIDS
patients and they are anergic - little or no cell mediated immunity is present!) Bell
stated that three of the
children in this study were "very close to being anergic."

Bell mentioned that of the 36 children who met the CDC
criteria, 50 percent of them had at least one
other family member in the immediate family who had "exactly the same complex of
symptoms" but not all
of the family members met the CDC criteria.

In light of the many child victims of this illness, I hope
that this column served to highlight some of the
medical information known about the children from "the early days." I also ask
that our readers continue to
help those of us here, at the National CFIDS Foundation, to raise research money aimed at
identification of
and therapeutic intervention for not only the adults stricken with the disease but also
for the many innocent
children who face this illness as well.